With my second slipped disc about 6 months back, it’s been exceedingly hard to find any sort of balance and stability within my body. It’s horrible enough to deal with the increased pain and coming to terms with a new injury, let alone the consequences it has on your lifestyle once again.

In the last 6 months, I’ve piled on 3 kgs and the injury has made it impossible for me to do anything in order to even lose the extra weight. It’s not as if I can eat any lesser because I’ve been on stronger medications, which, can cause adverse gastrointestinal reactions if I didn’t eat enough or took extra of it. Besides, it’s also normal for your body to need more energy as you deal with greater number of instable joints and extreme fatigue that comes along with it. I’m not saying you eat all kinds of junk food – for most days of the year, I am very cautious about the kind of nutrition I provide to my body. A change in your diet doesn’t fix EDS/HMS, but it doesn’t hurt to choose better options for your body, like going for anti-inflammatory ingredients.

As expected, I also haven’t been regular with my weekly sessions of Pilates and nor have I been able to walk as much as I was able to just before my back got injured again. Of course, it is annoying. Sometimes you want to yell because you’re frustrated and life is unfair and you just want to head out for a run to clear your mind. Ya right.

It affects you. It makes you feel trapped in your body.

If you’re dealing with a chronic illness, you’d understand how common weight fluctuations can be, and I bet you’d also understand how difficult it is to come to terms with it. Especially if it’s weight gain. But what can you do about it? In theory, people would give you a long list of things you “could” do but you and I both know, it doesn’t work. It’s not as if you don’t know what’s needed to lose that weight, it’s the practical bit that you can’t quite do. Even if you wanted to. Oh, you could go on a crazy diet if you really wanted to – but what are you putting at stake? Your health.

Worth it?

Nope. Not at all.

Each time you look at yourself in the mirror, you’re reminded of how your body has changed or is changing. The increasing softness around your form, the extra jiggle and wiggle, some pointy parts of your joints sticking out… the visible cellulite..the lack of muscles even after doing what you can (because your body builds muscles three times slower than those around you with healthy collagen)…. It’s hard enough to see yourself like that at the age of 25 and even more so to grasp the fact that you can’t do much about it. You’re no longer the you who could just “dance it off” or “gym it out”, you know? You’re not like those around you, or like the hot Instagrammers who are able to do a lot more with their bodies. It’s only normal (sometimes) to feel like crap when you see where you are, but it’s not helpful (or healthy) to continue feeling like crap for too long.

At some point you have to remind yourself that you can’t compare yourself and your experience with anyone. Comparison does no good to anyone anyway. Those who are able to do what they want have the privilege to do it and they need to be ever so grateful for it. You’re causing yourself so much extra suffering if you’re comparing yourself to people who are not born in a body like yours. It’s useless and takes away all your time and energy – something you could better utilize by practicing self-care and self-love; which will ultimately help you achieve some amount of acceptance and balance.

After years of struggling with self-acceptance due to EDS/HMS, and resisting the drastic change my life was beginning to go through, I am finally heading towards some amount of mind-body balance. To be honest, I don’t think it ends here. It becomes a huge part of our journey. Something you work on daily, pretty much. It’s A HECK lot of conscious work and effort but with enough patience and continue practice, I do believe that at some point I will be able to accept the whole of me, and the whole of my experience a lot more than I do today. This is not to say that there won’t be days I’d be frustrated or depressed with life – of course, not! But hopefully I’m able to get out of it more easily.

“Dear Body” Message Writing Exercise

How do I continue strengthening the relationship between my mind and body ?

I do the “Dear Body” message writing exercise.

I came up with this exercise for myself, hoping that at some point, I’d share it with those who are fighting their body (like I was) instead of fighting their illness.

We need to become best friends with our body, work together with it in order to deal with the limitations presented by the illness. I keep reminding myself, it is completely okay to own the illness, but it is not okay to let the illness own me.

How do I do it?

Every couple of days, I sit with my a journal (I have a journal specifically for this) and coloured pens, and take time just to write little messages to my body, from myself. I write positive and reassuring messages – ones that are truly motivating, something I’d say to my best friend/loved one if he or she was in pain. I am extremely loving and kind towards my body because I know it needs me at this point. I remind my body and give it that confidence that I have its back (yep, even with two slipped disc and a dislocated tailbone, I believe I have my body’s back – if it all makes sense). Yes, I do. I remind myself the same.

The point behind doing this exercise is to build that trusting relationship between yourself and your physical body; meaning, between your complicated mind and your complex body. If you’re able to create even a little bit of that trust, you’d see that your body respond to the positive, affirming messages that you send to it. Often times, our body just wants to be heard and by writing these messages, we’re letting it know that it can depend on us. We are choosing to honour our body and act in its best interest. We choose to respect its needs, and in return, it learns to communicate with us better. You become more attuned to your own, fundamental needs.

I’ve been doing this exercise for a while now and I probably won’t stop for the rest of my life. It’s not something I do only when things get real bad. I do it every couple of days no matter how good or bad the day has been. On bad days, I thank my body for the good days in the past and motivate it. On good days, I thank it for holding up and simply just being. I enjoy writing to my body; I really do. Sometimes I draw in my journal, if that’s how the pain wants to express itself in that very moment. This exercise has helped me become more compassionate with myself – something I seriously lacked at a few years back. Needs of those around me were more important to me than my own and obviously, that attitude didn’t work in my favour at all.

Why write?

I personally find that writing or journaling is extremely healing. I love the idea of being able to flip through, to see the progress I’ve made, the ups and downs and to observe my thought patterns. It helps me understand myself at a much deeper level and I love that. Writing helps to ground your thoughts and emotions – I see it as a way to get things out of my system. It’s wonderful. You could choose to just repeat positive affirmations to yourself, which sure is effective, but from my personal experience, the ritual you create around writing a letter or message to your body is amazingly powerful – even more so than just repeating affirmations.

Today, as I deal with increased pain and the excess weight, I still continue to write to my body. I know it’s needed – to remind myself that it’ll al be okay. That I’ve done this before and I can do this again. That the weight gain is only natural at the moment and I can still be in control. It’s become one of my favourite writing rituals.

Here’s one of the messages I wrote to my body:

“Dear Body,

For all that you’ve been through,

And all that you deal with every single day,

I just want you to know –

I’m still proud of you.

Love,

Self.”

Just about a week ago my back was giving me trouble and I was feeling horribly restricted by the pain and didn’t know what to do. My physiotherapist had helped to tape my back up, hoping it would give me some relief. Taping usually provides me with some amount of support and I think it’s fantastic, but at times – nothing helps. We know that. It was that day when I gathered all my energy (and courage!) and clicked a photo of myself. I looked through my “Dear Body” journal and found a message that seemed appropriate for the photo. Of course, I was a little hesitant to post the photo along with it but I realized that’s exactly the feeling I must overcome. I know it was important for me to get this out because sometimes I feel like I am held hostage in my body, by my body… and I know I’m not alone. I’m well aware that there are many others out there who feel the same.

No body knows the pain you’re going through – so their judgement doesn’t matter for anything. This is your journey.

With a lot of guts, I finally decided to write this post, along with this photo that I took. It was necessary. I want those of you who are suffering to know that you are not alone. I am here with you. Though our experience may not be the same, we recognize each other’s suffering – and that’s the best part. This is the truth – I have to work towards self-acceptance too, and it’s NOT easy at all. But I believe it is very much possible to build a healthy relationship with the new you and that definitely requires time.

This is me. This is who I am today. And that’s okay. I accept myself the way I am. By letting go of the need to be perfect, I am choosing to not make my experience any more difficult than it already is.

Honestly, there is no perfect. There is only close – to – perfect acceptance of what is.

Might be adding another item to my #disability aid. I’ve had braces, slings, tapes and guards up till now and they’re all useful in their own unique way. Plus, they work together to keep me moving about and functioning. As much as I try not to become overly dependent on them, I also know that they’re just part of my support aid and that’s totally fine.

Lately I’ve been on my feet quite a bit and things just seem more busy in my #life (compared to last year) – I don’t think it’s the good kind of busy – it’s the “can’t help it” sort of busy, and I do hope I’m able to handle this situation (physically) as well as I imagine to (mentally). It gets really exhausting and in the last couple of weeks, I’ve had times when I seriously couldn’t get out of bed. All my #joints were in a bad state but the sharp pain right underneath both my knee caps literally made it hard for me to stand up and even walk around the house to get the things I need in order to help myself.

I guess that’s when it hit me again – and it has hit me before back in 2014 when both my knees gave in – that I might need extra #support at some point. I do usually have my knees taped up, and when I don’t, I have guards to make sure that my kneecaps are in place and I’m able to walk around. Then again, there are some days when I feel even that isn’t enough. No, it’s not just in my brain and no, I’m not planning to become overly dependent on my disability aid as such. In fact, on certain days, I choose to train my body without them and I manage okay at times. I make sure I carry it all in my bag though, you know, just in case.

Again, I wish everything was all uncomplicated and didn’t require much thinking, and as we all know, that’s not the case. Using a walking stick means using a lot more of my wrist. You see, your body has to work together, all it’s dangling joints need to team up and say, “okay! It’s our turn to look after you (a particular joint) today.” and help you manage part of your body that require the most attention. At times, it doesn’t work – it simply doesn’t. Because your entire body says, “You know what. No. Not today. Today I choose to not work. End of story. Period.” That’s when it gets the hardest to manage. It’s the hardest when the intense physical pain you experience starts to affect your mental capacity to focus or get through the day. You get the idea?

So when I decide I probably need a walking stick, it also means I have to think trough it properly. A lot more than I like. Will my right shoulder be able to take it? Can my wobbly wrist manage the extra pressure? I’m here trying to lessen the pressure on my knee caps, but can my arms handle it? It’s a lot of decisions. You can read my previous blogpost about how you’re constantly – and I mean it – constantly,making decisions all day long if you’re living with an illness that’s chronic and causes you pain all the time. Pain lives in your body.

I’m almost certain about the walking stick, though I still have to weigh certain options out. A person from my Instagram community of spoonies recently happened to get a walking stick too (it was funny how I saw her post just when I had made a decision), and she said something like, well, if you’re going to be disabled at twenty-something, then you might as well be stylish about it. SO agreewith her! Alright, though style is least of my concern right now(duh, it never is for anyone like us), if the walking stick is functional, provides me the needed support AND looks and feels like “me”, then I’d love that.

Let’s see how the search for my walking stick goes. How does it feel like to “need” a walking stick at 25? Well, not great. Not the best feeling. But also, once again, as your grow with your illness, you learn to accept your needs for what they are. Even if sometimes they are like that of a little, old, grandma. That’s why, I think it’s completely OKAY to need and want anything in your life that makes your experience of living just a bit easier, if not worthwhile. If there is anything that can help to lessen the pain or at least provide extra support or stabilityto your body, it’s worth it. For me, everything is based on what’s right for my health and body in the short, and long-run. I look at my decisions and actions through the lens of my body; from my body’s point of view.

When your joints freeze because it’s raining and it’s too cold to handle!

The cold gets to you – you like it but your body doesn’t. You want it to be cold outside because you’ve been dying in heat for a long time but your joints feel the chills deep inside. You’ve been dealing with migraines and the cold is sort of soothing, in some ways. But you joints hate it. They ache and hurt and feel heavy. They feel fragile. It’s horrible to have both these experiences simultaneously – on one hand you are sick of the humidity and stickiness and want to wear thinner, lighter clothes and on the other hand your joints need to be taken care of. Maybe you need a thick coat.

Not just that, it’s not so easy or straightforward – just wear more layers and get to work – nope. That’s not how it works. It’s more like this – you wear extra layers and sit in bed. Not even sit, you lie down in bed because your joints are literally cringing away and you can’t do anything. You may even need socks because the old grandma that lives inside of your body (sometimes I wonder if there is an old woman living inside of me. An old soul of some sort) wants her feet massaged and needs her socks on. She needs hot packs too – maybe even four at times.

So you wait in the bed till you feel good enough to get out and begin your day. Or you end up making yet another decision to listen to your body and stay in bed all day – if that’s what grandma wants. You listen to grandma. Because your brain doesn’t know any better at times.

Chronic illness messes with your brain on a daily basis. Chronic illness which causes you debilitating pain every minutes of the day literally screws around with your ability to rest your mind because you are just constantly making decisions. Some of these decisions may sound so freaking trivial to majority of the people but you can’t even imagine what it is like to spend your brain cells over “trivial” matters for your health and your body. Technically, you’d prefer to save these for “more important things in life”.

But even the little things matter so much to us.

If an average human being makes 4 “trivial” decisions per day and 0-1 bigger ones, we’re easily making about 50 “trivial” ones and 10 bigger ones on a daily basis. I’m not even exaggerating – maybe the ratio is even greater.

Point is, it is necessary to slow down. Especially because we are making so many decisions all the time. No body needs extra brain cells wasted. No one wants extra pain. You’d say, there are far more important things to worry about and to that I’d say no. There aren’t. I guess we don’t have the privilege – we really don’t. The most important thing to us ends up being our health. Overall health. We choose to give in to it because if we don’t, we’re asking for more suffering. These “trivial” and “insignificant” issues can cost us our health.

It’s frustrating at times but as you learn to grow (when I say this, I’m referring to the growth you experience as a person, the change you go through as you deal with the illness on a daily basis and the acceptance you start to develop) with your illness, you learn to become patient and treat your body like it needs to be treated. With love and respect, and extra kindness. Even if that means having to sweat in a fur coat to make your joints feel a little better.

To be honest, I’m super beyond fatigued. There are times I wish things looked different, or that my health was like that of any 25 year old. Sometimes I feel that’s the kind of life I’m more familiar with and had plans for.

What happened then?

Well, I know what happened. Life (actually) happened.

Lots of things went wrong and many others went right for me to be where I am today. Both ways, I’m grateful because I’ve grown as a person and figured so much out! Dealing with a chronic illness is painful and challenging as anything can be – to live with it in your body and make choices that honour your health, which involves making some really tough decisions. REALLY tough. You have to find ways to embrace your limitations and open your eyes to new possibilities – and believe me, it takes time. Ages, sometimes. At times you feel great, and at times you don’t.

Every day brings new opportunities and new challenges – sometimes both, and you don’t know what to do. I’m always trying to make choices from a place of my ability rather than my disability… But frankly, on days like today, it just doesn’t work. You want the day to end. You want to be in bed and wait for all your energy to come back to you.

I can’t say I hate life or the circumstances I’m dealing with – no, it’s a part of me. A part of who I am. My experience is now a part of my biology. And my biology is a huge part of my life. It is what it is and I’ve largely come to terms with it. It has made me who I am today and it is making me into who I can be. I strongly believe that I own this illness and don’t let it own me – on a greater scheme of things, I’m learning to manage. Even then, it is still very physically, mentally and emotionally tiring at times.

It’s only 3pm and I feel as if I’ve been up for 3 days, ran 3 marathons and been on anaesthesia since. Seriously, I want to hibernate for a long time. This week has been crap and tiring. I can’t wait for it to end :) Enough already! I think next week will be better.✨

On days you absolutely can’t do anything about your experience and your plans don’t count for anyone’s sake. Most days are bad enough (you learn to manage) but days like today are worse.

In my previous post, I described pain associated with EDS/HMS to be either constant or increasing. It is never really zero, nor does it decrease as such. Well, at least that hasn’t happened in the last six years.

You learn to get through days when the pain is fairly constant, but on other days, you just have to stop and be okay with doing nothing but simply breathing through it.

Not that it helps with pain, but dark chocolate gives me a temporary burst of happiness which is so worth it on days like today. And at times, it surely helps to have friends who are so willing to just drop by to spend time with you while (and even though) you’re in pain.

The main thing about forgiveness is recognizing that others, just like us, are humans and can make mistakes, and, becoming okay with that fact. I don’t think it means you give in and be open to hurt and pain all over again, or that you have to live up to their expectations and rush yourself through your feelings – forgiveness means you let go and let yourself heal at your own pace. It means you’ve chosen to move forward by taking them out of the equation. It doesn’t have to mean that everything is okay. Be gentle with yourself.